Monday, April 7, 2008

In early April, Michael ( our hero pictured above) flew in from Denver to help me out with lifting Neavey as Keith recovered from a surgery. And by help out with... I mean "did all lifting" for a weekend so as to give my back a break. It was really nice to have some brute strength around after several days of doing all the lifts myself as Keith recuperated.Although I refer mostly to Michael's brawn, he is one of Keith's oldest and dearest friends. I'll speak for Neavey and Keith...we loved having him join in on our Neavey life for a few days. He's quite a lovely person to chat and hang out with... Did I mention he officiated our wedding as well? So talented, that Michael!Our friend Maritza, one of Neavey's surrogate "aunts/tias" (aka: Titi), stayed over for a bit as well and helped me with many a lift.

CHECK IT OUT- from Amherst Alumni magazine

Neavey's diagnosis or lack thereof...

Her neurologist would tell you she has cryptogenic generalized epilepsy. It's not so much a diagnosis but a state or a condition. What does it mean? Neavey has complex partial seizures and generalized seizures. They originate generally in any part of the brain. And the kicker is...we don't know why she has them, or why we can't control them completely.

And it would seem they have no relationship to her severe developmental delays which include no receptive or expressive language. She cannot take care of herself in any way. Once upon a time (when she was a normally developing 3 month old- sans the seizures that started at that time) her father (Karl) and I were told that she would most likely grow out of it by age 5. If you're new to Neavey's story, her father and I are divorced. Although I wish I had her with me more of the time we do have a 50/50 joint custody arrangement.

No one can explain why Neavey is but I know what she is. She's the love of our life. We want to share her with any part of the world that can bear it. So, we will always bathe her, and feed her, stretch her legs, fix her hair, soothe her after big scary seizures, and a zillion other things... but most of all we will love her.